Aa
Your Caregiver
Not really a question -- just needed to blow off some steam.... Been reading what all of you brave souls are going through...just so I can be the most prepared I can be to be a good caregiver for my husband when tx starts on Tuesday and Wow....now I'm really scared! My husband is just fixing to start tx -- and I'm the one that's angry! Not fair I know...but he has yet to ask me if I'm ok even once.
I know that I'm not the one that is going through tx, at least not my body, but as the sole caregiver, the caregiver IS going through tx too!
I'm the one that has done all the research, read all the blogs and have been trying to prepare us for the "journey" since Memorial Day when we found out...and he wants to bury his head in the sand and say "it'll all be fine...that's not going to happen to me". It seems for the past 2 weeks he's been doing everything in his power to push me away -- and the tx hasn't even started yet -- and I'm wondering how the hell I'm going to survive 48 weeks of this!
He is HCV 1A with a viral load of 5.1 million. Had the biopsy 10 days ago -- no results yet, get that and tx both on Tuesday -- and he freaking whined for 4 days after the biopsy -- not from the biopsy, but from the demerol shot he got for the freaking pain! I'm not kidding -- 4 days! I just wanted to tell him to "Man UP!" I've had 2 back and 2 neck surgeries along with 6 other surgeries from a car wreck and didn't whine that much -- how am I going to survive 48 weeks of tx???
I hope those of you who are fortunate enough to have someone by your side through your illness find a way to take care of them just a little bit and thank them for being there -- it's such a small thing to do and would mean the world to them and make it all worth it to them! I will make it through the 48 weeks with my husband, but what he has to SAY in that 49th week might make the difference on whether I stay or whether I say it's no longer worth it. Just so you know -- 6 kids and 3 grand kids -- been together a while.
Seriously -- where would you be without your SO/spouse/caregiver????
I know that I'm not the one that is going through tx, at least not my body, but as the sole caregiver, the caregiver IS going through tx too!
I'm the one that has done all the research, read all the blogs and have been trying to prepare us for the "journey" since Memorial Day when we found out...and he wants to bury his head in the sand and say "it'll all be fine...that's not going to happen to me". It seems for the past 2 weeks he's been doing everything in his power to push me away -- and the tx hasn't even started yet -- and I'm wondering how the hell I'm going to survive 48 weeks of this!
He is HCV 1A with a viral load of 5.1 million. Had the biopsy 10 days ago -- no results yet, get that and tx both on Tuesday -- and he freaking whined for 4 days after the biopsy -- not from the biopsy, but from the demerol shot he got for the freaking pain! I'm not kidding -- 4 days! I just wanted to tell him to "Man UP!" I've had 2 back and 2 neck surgeries along with 6 other surgeries from a car wreck and didn't whine that much -- how am I going to survive 48 weeks of tx???
I hope those of you who are fortunate enough to have someone by your side through your illness find a way to take care of them just a little bit and thank them for being there -- it's such a small thing to do and would mean the world to them and make it all worth it to them! I will make it through the 48 weeks with my husband, but what he has to SAY in that 49th week might make the difference on whether I stay or whether I say it's no longer worth it. Just so you know -- 6 kids and 3 grand kids -- been together a while.
Seriously -- where would you be without your SO/spouse/caregiver????
You hang in there. You'll be ok. Come here when you need a hug or inspiration. I've already found it a lot and I've not been down this road long. Good luck with the new study. I'm hoping for the best.
Denise
Denise
We got his biopsy results -- solid stage 2 -- not too bad, not great, but not the worst news. Since he's medication naive he's eligible for a study beginning in October by Valeant Pharm. that is a Class 3 study of "weight-based doses of Taribavirin combined with Peginterferon Alfa-2b vs. Ribavirin combined with peginterferon alfa-2b in therapy-naive patients with chronic HCV genotype 1 infection" that he's chosen to enter.
Thanks everyone for your words of encouragement.
Thanks everyone for your words of encouragement.
Thank you, after picking up the phone and putting it down and picking it back up again I decided to call and make an gyno appt. which is a few months overdue and while I was on the phone I asked that I be tested for Hep C along with my check up. So, it's done and no turning back now. All I have to do it wait until the 18th.
Maui, I feel the same way about me being able to take care of my husband. And, as Liz said it will be for peace of mind too. I'll let you all know when the test results come in. And, Liz I too am guilty of using my husbands razor and yes toothbrush and also finger nail clippers. Who doesn't use each others stuff at times? But, now we'll be more cautious with it. Lots of prayers to all of you.
Maui, I feel the same way about me being able to take care of my husband. And, as Liz said it will be for peace of mind too. I'll let you all know when the test results come in. And, Liz I too am guilty of using my husbands razor and yes toothbrush and also finger nail clippers. Who doesn't use each others stuff at times? But, now we'll be more cautious with it. Lots of prayers to all of you.
My husband was diagnosed in May of 2006 and I didn't get tested until two months ago. I'll admit it, I was scared to do it. The other reason I waited was because I wanted to get him through his treatment first and then if I did test positive I would deal with my situation. Thankfully that didn't happen. Oh yeah, my test was negative. =) I guess it all depends on what kind of person you are. All my friends thought I was crazy for not running out and doing it right away but like you, I just didn't know if I could handle all of that at once (if it came back positive). You'll do it when the time is right. One day at a time...breathe in....breathe out...breathe in...breathe out!
Thanks BThompson for your comments--you are right on the nose about feeling like we had the rug yanked out from under us. Of course the intital issue was getting thru tx without rejecting, etc., but hubby had absolutely no probs with that and was rapidly down to 1 mg ProGraf twice daily--that was it. Pretty amazing, huh?? So to go from that to the toxicity of Interferon was such a slap in the face...we do not know much about our donor, but we know a nurse who was at the organ harvest and she was allowed to tell us the liver was from a young adult. My hubby is 55. So, it could be a lot worse, I know. We are at peace, with whatever comes. We're pretty sure he's going to be yanked out of the program in 4 weeks, so we are prepared for that, and almost relieved. He wasn't sick when he started tx, we got one miracle with the transplant, we figure maybe there's one more out there for him. So much is being done, research wise for HepC treatment....who knows, maybe even the 12 weeks he'll have been on the drug will have a slowing efffect. Postitive thinking, good food, and LOTS of love from a big family are going to get us through this. Thank you and I wish you the best!!!
Hither-dither--of course as soon as my hubby was dxed with HepC he was frantic he'd passed it to me. I immediately went in for the test as did our two kids who were over 18 at the time. No one has it. All our kids, as they have turned 18 have been told about it & tested and no one has it. All we ever did was be sure to keep the kids from borrowing dad's razor or toothbrush. (I admit I had done both over the years) 31 years married---5 kids. It's a non-issue in our family. I imagine all spouses are tested, just for peace of mind.
Hither-dither--of course as soon as my hubby was dxed with HepC he was frantic he'd passed it to me. I immediately went in for the test as did our two kids who were over 18 at the time. No one has it. All our kids, as they have turned 18 have been told about it & tested and no one has it. All we ever did was be sure to keep the kids from borrowing dad's razor or toothbrush. (I admit I had done both over the years) 31 years married---5 kids. It's a non-issue in our family. I imagine all spouses are tested, just for peace of mind.
Thanks for all the responses. Just reading everyones posts are helping me cope with all of my emotions at this time. Everyone gives me hope that my husband can clear this thing. Not to change the subject but was wondering how many of the spouses here have gotten tested when they find out their husbands or wives have Hep C? I haven't yet and now that the shock is wearing off a little of mine having it, I'm getting a little concerned for myself. I know I need to go soon but to be honest I am scared and if I am positive I don't know if I'll be able to handle all this at once.
I feel for you and your husband's situation. It's cruel how you the transplant can make you so optimistic and then be by followed by the letdown of your liver being attacked again. I have been lucky and am almost seven years post-tx, but I know this disease can hit the immune suppressed very hard at any time. I was lucky in that my viral load stayed very low the first year and a half after transplant; but I remember when it came back with a vengeance and my liver went from no scarring to F2 fibrosis in only two years, and I really felt horrible in that period.
It is possible for the interferon and riba to help your husband. I am geno 1a and even have a pretty old transplanted liver (59 year old liver; I am 52) and I noticed within only a few weeks of starting treatment that my thinking had become much clearer (I am really enjoying the change, as encephalopathy was always my worst symptom pre- and post-transplant). I have the riba rage from time to time, but the brain fog everybody seems to have is pretty much non-existent for me. Naturally I have the anemia and almost zero tolerance for physical activity, but it is truly a gift to be able to think clearly all the time. And a biopsy at week 36 (I am in week 62 of 72 now) of treatment showed fibrosis improvement from F2 a year prior to starting tx to "no significant liver damage."
I hope your husband shows a good pcr result at week 12 and is able to adjust better to treatment. Disease processes are tough. Throw in the possible guilt of watching his abilities atrophy, feeling like a financial burden, and redefining his self-image as he gets sicker, and you can imagine how tough this disease has probably been for your husband. But you seem very perceptive and aware of these things. I am pulling for you and your family in this difficult time.
It is possible for the interferon and riba to help your husband. I am geno 1a and even have a pretty old transplanted liver (59 year old liver; I am 52) and I noticed within only a few weeks of starting treatment that my thinking had become much clearer (I am really enjoying the change, as encephalopathy was always my worst symptom pre- and post-transplant). I have the riba rage from time to time, but the brain fog everybody seems to have is pretty much non-existent for me. Naturally I have the anemia and almost zero tolerance for physical activity, but it is truly a gift to be able to think clearly all the time. And a biopsy at week 36 (I am in week 62 of 72 now) of treatment showed fibrosis improvement from F2 a year prior to starting tx to "no significant liver damage."
I hope your husband shows a good pcr result at week 12 and is able to adjust better to treatment. Disease processes are tough. Throw in the possible guilt of watching his abilities atrophy, feeling like a financial burden, and redefining his self-image as he gets sicker, and you can imagine how tough this disease has probably been for your husband. But you seem very perceptive and aware of these things. I am pulling for you and your family in this difficult time.
I am in the exact same position as you are--my hubby is the one with HEpc and I am his primary (well, ONLY) caregiver. He's on his 8th week of treatment. He was a transplant patient and we had so hoped for a few years of good health but got 4 months, after recovery before his nasty bug invaded our lives again. Needles to say, we are less than happy--I don't think either one of us has even emotionally recovered from the transplant from last Sept. He was ony beginning to feel well and then he had to start tx. I won't lie and say it's a walk in the park. But it does appear to be unique to each person....my hubby has unfortunately had all the symptoms and is exhibiting signs of pretty severe depression (won't medicate for that) so it is a tough go here....I wish I had great words of wisdom. The things other posters have said are all good and I guess if I could say one thing it would be to really, really try to remember that the anger, mood swings, whatever, really are not the person you love--they are the drugs.
My hubby is sick at heart that through his teenage rebellion he contracted this--and he feels terrible that it has almost ruined us, financially....our relationship has been rocky (and we too are long timers-5 kids, 4 grandkids) ...and I know he hates how he treats me a lot of times. He pushes me away a lot. I try not to be hurt. I think he just doesn't do "feelings" well, and it's scary as heck. He never says he's sorry for snapping at me, I doubt he even realizes he does it. I cry a LOT. If he's too crabby, I'll say prayers with him, kiss him goodnight and sleep downstairs, He gets the message--I'm not playing games, but I am in this too--Oh, and if I had a dollar for every time he has said 'This is NOT about you!!" I could buy a month's worth of Interferon.It absolutely IS ABOUT YOU TOO!!!
I took a shift at work today, even tho it was a holiday, because he was just too grouchy to spend the day with. He laid in bed all day.
So, all you can do is go one day at a time, and the one week at a time and hope for the best. Hubby's 12 week test is coming up--we've already been forewarned it doesn't look good for him--so I don't even know what the next step is.
I do wish yout he best--come post here often. People are very knowledgable and very kind and it has been a balm to my troubled and anxious little mind!
My hubby is sick at heart that through his teenage rebellion he contracted this--and he feels terrible that it has almost ruined us, financially....our relationship has been rocky (and we too are long timers-5 kids, 4 grandkids) ...and I know he hates how he treats me a lot of times. He pushes me away a lot. I try not to be hurt. I think he just doesn't do "feelings" well, and it's scary as heck. He never says he's sorry for snapping at me, I doubt he even realizes he does it. I cry a LOT. If he's too crabby, I'll say prayers with him, kiss him goodnight and sleep downstairs, He gets the message--I'm not playing games, but I am in this too--Oh, and if I had a dollar for every time he has said 'This is NOT about you!!" I could buy a month's worth of Interferon.It absolutely IS ABOUT YOU TOO!!!
I took a shift at work today, even tho it was a holiday, because he was just too grouchy to spend the day with. He laid in bed all day.
So, all you can do is go one day at a time, and the one week at a time and hope for the best. Hubby's 12 week test is coming up--we've already been forewarned it doesn't look good for him--so I don't even know what the next step is.
I do wish yout he best--come post here often. People are very knowledgable and very kind and it has been a balm to my troubled and anxious little mind!
The only way she can accurately determine the status of his liver is with a biopsy. As soon as my husband was diagnosed with HCV the next step was to schedule the biopsy so that they knew exactly what they were looking at. The fact that you aren't getting good vibes from the NP isn't that great. Throughout the course of his treatment you will probably be talking with her a lot and if you already aren't that comfortable with her then it might be time to look for another doctor. As for achieving a drop, of course it's possible! His viral load isn't that high. My hubby's was over 4 million. Everyone is different when it comes to responding to treatment but the one thing you have to have is hope and it doesn't sound like this nurse is filling you with that. Are there any other doctor's in your area that have experience with HepC?
He is genotype 1A. NP is guessing looking at his blood work that he is between stage 2/3. Can she be that accurate by just looking at his blood panels? She wouldn't consider a biopsy she said because his platelets were too low. And, she didn't sound too convincing that the treatment would help him. I didn't get good vibes from her. Is it possible for him to achieve a drop? His viral load is 650,000.
My husband's platelets went down during treatment but have climbed back up since he stopped. As of his last bloodwork they were at 175. I still think that's low but it's within the normal range so we'll take it. Hither, I wish they would do a biopsy. I think it's so important to know what the whole picture is as far as any liver damage. Do you know what genotype his is? Mine was type 3 so he only treated 24 weeks. He was UND at week 4 (a RVR), so that really gave us the extra push to keep going. He devloped anemia pretty fast and had to be on Procrit for almost his entire treatment. Hang in there...we'll get you through this!
His plates are low but not too low. They'll watch them to see how he does. 17 weeks in and mine are down to 142. They will put him on tx and watch the RBC's, Hg's, WBC's, Plates etc. If he hasn't achieved a 2 log drop in VL at 12 weeks they will most likely discontinue treatment. A 2 log drop is roughly calculated by dividing by 100. So, if hubby is @ 5,000,000 at the start, he would have to be below 50,000 for a 2 log drop. 5000 would be 3 logs, 500 is 4 logs, 50 is 5 logs and below 30 is considered undectectable. I think that around 80% make the 2 log drop at 12 weeks.
It's best to be undetectable at 12. If you are UND at 12 you have EVR(early viral response). If you are UND @ 4 weeks you are RVR(rapid viral response). RVR's
have an 89% chance of a cure, EVR's are said to be 65-80%, 2 log droppers are less likely to be cured.
It's best to be undetectable at 12. If you are UND at 12 you have EVR(early viral response). If you are UND @ 4 weeks you are RVR(rapid viral response). RVR's
have an 89% chance of a cure, EVR's are said to be 65-80%, 2 log droppers are less likely to be cured.
Maui, you sound like me. I'm doing all the research and go with him to all his appts. and everything you described. Congratulations on his SVR. I hope my husband does the same thing. I stay on the computer and he hardly knows how to turn it on. I find it's better if we are together that way we both can ask questions. My hubby's NP is going to put him on the treatment for 3 months to see if it works for him. But she didn't say what to do after that. I'm worried about his platelets right now. They are at 112,000. Is that really low? That's why they didn't do a biopsy. Thank you for your encouragement.
Just hang in there the best you can. It's not going to be easy but you will get through it. Like hither said, you will have to dig down DEEP. There are good days and bad days. Just realize that it's the meds, specifically the Ribavirin, that will make him feel like **** and also make him really irritable. You do have to let a lot of things go. He may fly off the handle over the smallest thing or he may not. My husband did! He also worked through his entire treatment (24 weeks). To me that was the most amazing thing and I'm really proud of him for that. He had a really rough time with treatment but in the end it was all worth it. We just got his 6-month PCR results and he is SVR. This board is/was a life saver. I don't know what I would have done without it. I was the one who did all the research, went to all the appts, and asked all the questions. It's not that my husband wasn't capable of doing those things himself, but it gave me something to focus on and since I'm the worrier in our family it was one more thing for me to stress about, LOL.
Good luck to both of you (and your husbands!).
Good luck to both of you (and your husbands!).
I cut my guy some extra slack because of his tx...because i can see and sense he doesnt feel good alot of the time. i let alot of stuff go and dont sweat the small stuff..but i also dont let him totally off the hook for his behavior either. For me..it has alot to do with my own attitude and i find, in general, if i have a positive attitude going into something , it can make all the difference in how i get thru it and handle it.
But if i am negative about something , even before its begun or happened, that attitude can also make it twice as difficult to get thru .
Dont anticipate negatively...and try to stay positive and believe it will be bumpy , but that you will get thru it OK.
Positive energy !
But if i am negative about something , even before its begun or happened, that attitude can also make it twice as difficult to get thru .
Dont anticipate negatively...and try to stay positive and believe it will be bumpy , but that you will get thru it OK.
Positive energy !
LnTnDal, my husband hasn't started treatment yet but we are talking about this together. I do all the research and go to his appts. with him and he wants and needs me by his side. We are in this together as I've told him many times. He tells me it'll be ok. Of course we don't know what's up the road after he starts tx but are hoping that it won't be so bad. We've both decided to keep a positive attitude about this and we both know that there will be some hard times but we are in this together and we can do it.
Now having said that, some men tend to be be whiners when they are sick. Through my own experience and my friends husbands and even one of my sons, when they are sick they are babies and have to be taken care of. Sounds like you have one of those kind. Lol. I'm hoping my husband doesn't get too bad, but if he does, I'll have to remember what Terry wrote above and I'm sure I'll go back to that many times. You'll have to dig deep to find patience and understanding because it is really about him now. And if it was me, I'd expect him to be there for me as I will be for him. Just a two way street here. Of course you know your husband better than anyone and how he reacts when either of you are sick. In the end it will be your decision on how you are going to handle it. He may be scared of what's ahead or he may be scared of dieing, any number of things could be making him act like that. From what I've read here on the boards it's not an easy thing to do and some say the hardest thing they ever did. Dig deep down. You can do this and we all can be your sounding board if you need us to be. You'll get through it like the rest of us. Best of luck to you.
Now having said that, some men tend to be be whiners when they are sick. Through my own experience and my friends husbands and even one of my sons, when they are sick they are babies and have to be taken care of. Sounds like you have one of those kind. Lol. I'm hoping my husband doesn't get too bad, but if he does, I'll have to remember what Terry wrote above and I'm sure I'll go back to that many times. You'll have to dig deep to find patience and understanding because it is really about him now. And if it was me, I'd expect him to be there for me as I will be for him. Just a two way street here. Of course you know your husband better than anyone and how he reacts when either of you are sick. In the end it will be your decision on how you are going to handle it. He may be scared of what's ahead or he may be scared of dieing, any number of things could be making him act like that. From what I've read here on the boards it's not an easy thing to do and some say the hardest thing they ever did. Dig deep down. You can do this and we all can be your sounding board if you need us to be. You'll get through it like the rest of us. Best of luck to you.
My husband was WONDERFUL while I was on tx and I made it a point to tell him that as often as possible. He put up with a few ugly incidents of Riba Rage with me, he cleaned the house, he cooked the meals, he would go to all my critical doctor appts. with me and he shuffled me to the ER 3 times while I was on tx. He also joined one of the Hep C boards in a show of support for me.
There is absolutely no way I could have gottent through tx without him. A good caregiver is priceless.
Mouse
Genotype 1a, Stage 3, Grade 3
Finished 48 weeks of tx on 4/13/07
Hoping for SVR on Sept. 20, 2007
There is absolutely no way I could have gottent through tx without him. A good caregiver is priceless.
Mouse
Genotype 1a, Stage 3, Grade 3
Finished 48 weeks of tx on 4/13/07
Hoping for SVR on Sept. 20, 2007
This is a list that I found on annother forum and it may be helpful
1. Only bring up the illness if absolutely necessary.
2. Be patient.
3. It's not him/her, it's the drugs.
4. Don't let an idle mind create crazy thoughts.
5. Don't push too hard, you'll push him/her away.
6. Listen and don't talk so much.
7. Be available, but don't nag.
8. It's all about him/her right now, your needs are secondary.
9. Tell him/her how much you care about him/her, but don't expect anything back.
10. "This too shall pass"
1. Only bring up the illness if absolutely necessary.
2. Be patient.
3. It's not him/her, it's the drugs.
4. Don't let an idle mind create crazy thoughts.
5. Don't push too hard, you'll push him/her away.
6. Listen and don't talk so much.
7. Be available, but don't nag.
8. It's all about him/her right now, your needs are secondary.
9. Tell him/her how much you care about him/her, but don't expect anything back.
10. "This too shall pass"
hey its not as bad as it seems.. I started this past friday nite and did shot that day and meds that nite in am and so forth.. iam doing great the first nite i had chills and sweats.. and woke up w/headache.. but now iam feeling pretty much okay, get light brain fog,, but very much doable.. Iam 1a stage 2 grade 2 *2 million vl
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